A couple of weeks ago, a support group for unit patients was set up. LB received an invitation to attend this group which was to be held on the Friday afternoon in the living room. That evening when I visited, I asked the staff member how the group had gone. Bit of a disaster, it turned out; everyone chose not to attend.

The choice agenda in practice. Kind of hilarious.

The following week, the group ran again, this time with the addition of cake. LB turned up, ate cake and chatted. A lot apparently. Of both.

The group is now called the Cake and Chat group. Well, for LB anyway. I’m not a big jargon person (I hope), but I think this is probably a rocking example of person-centred thinking.

Bit of a gap in posts for various reasons, none of which relate to LB. For once. Anyway, LB’s life is currently reflecting Candy Crush. Groundhog day at level 125. [Yes you Candy Crushers, suck it up.. it’s a therapeutic tool for me at the mo’ and getting to 125 has taken many, many night time/early morning hours. And I’m STUCK]. The choice offering is interfering in LB’s (non) school attendance. Decisions made in the weekly community team meeting about going to the farm to work are sunk by him being given the option to say ‘no’. So he’s been unit-bound since the buffet lunch last Sunday.

Not a big surprise really. Give any teenager the choice of school/work or doss off, most would choose the latter. But most teenagers aren’t offered that choice. And most would eventually realise that they have to do something productive. The adult space opening to LB is looking alarmingly like a version of day-centre-life.

I’m sure I’ve mentioned an article about an Oxford based learning disabled man’s (Rob?) long term experience of a day centre that was in a Sunday mag years ago. Rob? said if they finished their task of sorting screws (or whatever it was) before the end of the session (probably around 3pm), the staff tipped the trays out so they could start again. The futility of this activity was piercing. The article could have been (I wasn’t as up to speed in those days) heralding the increase in self-advocacy groups and advent of direct payments as I think Rob? went on to be an early member of My Life My Choice. These developments were great but we all know (well those of us who look at reality rather than the rhetoric *cough cough*) that this shift has been largely superficial. There are the lucky few who have fallen into an exceptional (but still cash strapped) social enterprise or individual setting. Most are unemployed, unfulfilling any potential they have. Eh, what’s that? Remploy? How many ex-Remploy employees have found new jobs? Naw, let’s not go there…*

I think introducing choice has erased discipline for young dudes like LB. The number of injunctions he took out against the dishwasher, as his allocated family task, was hilarious, but the job got done. School similarly have been easing sixth-formers into working environments, trying to help them understand that work is a part of life. But once you take that discipline away, you’re left with yawning space to fill. With DVDs, trips to the shops or fast food restaurants and hanging around.

That’s it for now, really. Unless anyone has any hints about cracking level 125 ?

LB went to the farm today. Under duress but with effective encouragement. His face lit up when he saw his teachers apparently.

He was lazing in the living room, surrounded by his transport magazines when we turned up this evening. He showed us his scrap metal notebook. After the list of items he’ll need to set up a scrap metal depot, he’d drawn a picture of a lorry on each page and labelled them ‘scrap metal lorry’.

Towards the end of the book, there was a picture of two men with guns pointed at each other, labelled ‘Dirty Harry’.

“Wow. Have you seen Dirty Harry LB?’ “Yes.” “You must tell Grandad, he likes Dirty Harry.” “Yes.” “Whose the other man in the picture?” “Dirty Barry.”

The excitement of the trip to the bus museum had worn off by the time we visited yesterday evening. LB was in his room, subdued, having chosen not to go to the farm (again).

Choice eh? Very, very important that learning disabled people can make these choices, we’re told. Unlike many other people, who have no choices in their everyday lives. Yeah, it’s so much better that LB is able to choose to laze about in his bedroom all day (again), than get a good day’s exercise, sunshine, fresh air, hang out with different people and be productive. My arse.

Of course loads of people would choose the room-laze option over working. But they wouldn’t be given that choice on a daily basis. They’d have to (if they could) do something productive. And more than likely want to after a few days.

I’m getting pretty naffed off with this choice charade as you can probably tell.

Anyway. Back to yesterday evening. LB’s bedroom was snug and comfy, with the evening sun shining in. He sat leafing through his Yellow Pages, with bus magazines spread across the floor. Jug of squash on the desk. It was calm and peaceful.

More struggles over adulthood, rights and capacity… though I’m really trying. Honestly.

LB was due to go to the farm yesterday. Taken straight from the unit, bypassing school, to work with Sue and his classmates. When he was told to get ready, he didn’t look keen so he was asked if he wanted to go. “No, maybe” was the answer. There followed a hilarious conversation where he was asked various questions about whether he liked the farm and what he wanted to do, with a lot of “no, maybe” answers. It was finally established that he didn’t want to go to the farm and would prefer to go for a second choice; a drive and a long walk. His teacher was called and she asked to speak to him (love her). He didn’t budge. He later made it clear he didn’t want to do the drive/walk option either and stayed in his room. Whose idea was it to give this dude choices???

I’ve heard a lot of stories like this to do with learning disabled people making choices (usually from parents). It’s a tough one. I know, I KNOW, I KNOW that people should be able to make decisions about what they want to do. But LB will always choose to stay in his room hanging out “self occcupying” if he’s given that choice.

I think my struggle is around two overlapping things;

LB isn’t making a decision in a vacuum; the choices offered, the way in which they’re presented in terms of the language used and the way it’s structured, the relationship between LB and the choice offerer, the implications of the decision made for that person, LB (and others) all feed into a complex set of interactions that can mean that the choice isn’t really a choice at all.

There is a constraining kind of meta-level control always present which means that, ultimately, LB can only really decide what he’s allowed to decide. If he makes a decision that isn’t perceived to be in his best interests, the swat mental capacity team come in and stop him from making that decision.

So it’s a heavily managed and mediated, complex, uneven ‘choice’ space. I don’t know what the answer is really. And I can’t see him ever emptying the dishwasher again.

Sleepless night, worrying about the end of Section 2. Then a last minute meeting at the unit this morning with LB’s head teacher, teacher, Vicki (a Charlie’s Angel), and unit team members to discuss his return to school. Bit of a rocky start to school return yesterday. He was taken to the primary site (as far as we can tell) and refused to get out of the car. “I’m confused”, he said.

Team LB Ed were impressive throughout the meeting. I was bemused by the vigorous writing down of the descriptions they provided of LB’s decline into “CRISIS” (beginning to seriously hate this term) when I’d already told so many professionals about this, but hey ho. Engagement at any level is engagement. It was also a reminder of how dire things had got.

The gap between education and health was palpable but also manageable with flexibility and a shared concern for LB. Plans were made for him to be supported to return to Trax and the farm with unit staff accompanying him. Sensible, informed engagement. Good. The ending of Section 2 was discussed. This would be discharged (?) today with an anticipation that he would agree to stay as an informal patient. If he wanted to come home, the mental capacity team would be called in. A further section unlikely because he’s currently a chill pill.

‘Er, can we be told whether he’s an informal patient or issued (?) with a DoLS (deprivation of liberty safeguard)?’ Oh yes. Action point; keep parents informed. No words.

The meeting finished with a new Team LB Ed/Health (Yowsers) and a general love-in about how much better LB had become over the last month. It was genuinely heartwarming and sealed with a cheeky smile from LB when we left. “Tsk”, I said to head teacher, as she had a weep outside the unit, “The crying days are over, we’re moving on to better places”.

Later that afternoon I got a call from the unit. LB wanted to know if I was going to visit tomorrow. “Eh???? Really??? Yes of course I will. I can come now if he wants?” I hadn’t arranged to visit this afternoon because I saw him before and after the meeting this morning. After a quick check I was told, yes, LB wanted me to visit today.

Five minutes later I was driving in the sunshine, humming to the radio, loving stupidly the fact that LB was actually asking to see me.

As soon as I saw him I kind of recognised but ignored the signs. I gave him the photos of the forensic police investigating Rosie’s break-in. “YOU LIAR!!!“, he shouted, raging. And, instantly, we were back to four weeks ago.

I don’t know what’s happened since I left him there, around 6pm. I rang later and was told he was still very, very agitated. I read into that; possible restraint? Medication? Harm to staff? Almost definitely no Trax tomorrow if medicated? A Section 3???? I don’t know.

And LB in deep, deep distress.

Now, I don’t know, they don’t know and maybe (as often is the case) we’ll never know, why he got so distressed so suddenly. I’m sure it’s to do with the fact they had to inform him of his rights and the ‘discharge’? of the section. It’s the only thing that’s changed between this morning’s chill bear dude and this afternoon. I don’t know what was said to him about this discharge from section? (Is it a set statement that’s read out, or a more measured interpretation that he might understand?) I think he thought he was coming home when I turned up tonight. What else could account for him asking if I was going to visit, and his immediate distress when I did.

He can’t possibly understand the complexities of the Mental Capacity Act or the Mental Health Act (as is the case for a lot of people including me). To expose him to either in a “thinking” capacity is cruel and unnecessary. Especially as he doesn’t really have a choice about staying or leaving. The system is seriously flawed.

Well the light hearted, fun chit chat involving LB and his unusual take on the world, that partly inspired this blog, seems pretty distant now. I’m glad I captured some of it on these pages. It’s currently masked by reasonably regular extremes of behaviour that are unpredictable, aggressive and deeply upsetting. The trouble is, there isn’t any real (effective, valid, meaningful) support to deal with this.

I got a call at the beginning of a meeting in Manchester on Monday, after a Mother’s Day that included, in equal measure, horror and lovely, lovely love stuff. LB had had a serious meltdown? crisis? situation? at school. It sounded awful and his teachers and the school nurse were understandably shocked and upset by it. I could only say, standing in the corridor, trying not to cry with the futility of the situation, ‘I don’t know what to do’.

Cripes. Well who does know? Who should know?

Er, health professionals? Highly trained specialists who have the relevant knowledge to help LB and guide us through this.

No. Not really.

Trouble is, they won’t say that.There is a faux professionalism that involves sticking to a script that is irrelevant. Without that script there is nothing. LB’s unusual behaviour challenges, tests or confounds the boundaries of their knowledge. And this, in turn, is complicated by the resources available. This is not a comfortable situation for anyone, so we go through the motions in a performative way. Questions asked. Answers given. And they (pick your health professional) ease out of our home. No further forward. No change.

Tomorrow it’s the turn of the (learning disability service) psychologist, who was passed the baton by the (learning disability service) psychiatrist (who did nothing). Our GP embraced her contribution this afternoon in an obviously appalling situation. I promised to be open-minded when I meet her.

“Can you prescribe something like a horse tranquilliser as well, maybe with a dart gun, for those particularly tricky moments?” I asked. “No,” he coughed, “this can’t be resolved through medication. LB needs help to learn strategies to manage his behaviour, aggression and anxiety. That is the role of the psychologist.”

“Ah, okeydokes,” I said, leaving his office, with my promise taking a hammering.

At the moment our lives are becoming increasingly [hahahaha] complicated as LB has become very anxious and distressed. We’re in a big old hot pot, dealing with support and services underpinned [big fanfare] by the gov’s personalisation agenda. Key principles; Choice and autonomy.

Well this sounds like the baby. Choice and autonomy.. lovely, lovely, lovely. Let’s have a little looky at how this is shaping up eight weeks on;

Social Services. After a complete meltdown that resulted in LB out of school for a couple of weeks, the Care Manager acted instantly to organise a wedge of emergency direct payments for us to buy care. Good. We can choose what type of emergency support we want. Unfortunately, the kind of people who may be willing and able to hang out with a 6ft tall, young man who may, or may not become aggressive, are not that much in supply (and hugely in demand). So in practice, not so good. The alternative is the Respite Centre with the snooker table. Complete fail. CM also offered to organise a round table meeting. Good. And, after a particularly alarming incident (Episode A), has given me an emergency number to call. Good. Unfortunately, if we call that number we are opening a window for LB to potentially be sectioned. ‘Mmm. Well I’m sure they will do what’s best for him in that situation‘…I hear you think. Not really. ‘What’s best for him’ relies on what’s best for him being available. Not a mental health unit over a hundred miles away in Norwich where two of his class mates have spent months. There is no in-county support for young learning disabled people. That is a complete fail.

Health. The GP instantly prescribed anti-depressants over the phone without hesistation. Good(in the sense he took our concerns seriously, not that LB is now on more medication). After LB mumbled something about suicide near some professional type person, he was whizzled into a same day appointment with a psychiatrist. Good. (Well a bit weird that the concerns we have are largely ignored but one word gets instant attention). The psychiatrist asking LB if he felt suicidal was a complete fail. Never, ever put ideas into that boy’s head like that. She then, after a telephone appointment 6 weeks later, discharged him. Not so good.‘Why are you discharging him?????’ I asked, seconds after I’d told her about Episode A. ‘He was referred to me because of the concern about suicide, now that is no longer a concern, the psychologist will help him to manage his anxiety.’ Not so good [and given our experience with psychologists over the years (star charts anyone?) suspect this detour will be a complete fail].

So what are we left with? Money to pay for care. No care to buy. And no one doing anything to help LB become less anxious.

Choice and autonomy? Feels a teeny bit flaky to me. Can we have some action?

Ding dong time this afternoon with the Practice Manager (PM) of our GP surgery. They’ve introduced a crackpot system where you can no longer book an appointment with a GP. You have to arrange for a GP to call you back that day to assess your need for an appointment. It’s all in the name of patient centred care and choice.

So I had a 30 minute call with PM who’d swallowed the health policy rhetoric manual but could not explain why I couldn’t make an appointment without a screening call. The gig was that I could agree to a GP call-back and potentially get an appointment the same day, or I could be allocated a loser slot, out of hours on a Tuesday night or Saturday morning.

In response to the (numerous) concerns I raised, she tried to persuade me that GPs were so flexible in this new system that call-back could be arranged to coincide with tea-breaks for people at work who didn’t want to discuss symptoms in front of colleagues, and that an online option existed so patients could type their concerns quietly. No reflection on how unrealistic or burdensome this was.

Yes, in some contexts of course it’s fab to have the option of managing some health related issues by phone. I howled for that when a GP rigidly insisted on ‘seeing’ LB in the surgery before re-referring him to neurology after he’d spent a night in A&E recovering from a massive seizure. But not a blanket screening system. That’s just crap.

Eventually, she suggested making an out of hours appointment in 2034. I told her I’d just crawl off into a corner and quietly die. She didn’t budge. It was screening call or crappo appointment. That was the system. I said I should probably contact the local paper about it. She booked me an ‘in hours’ appointment in a few days with my GP.

So, this new system is also going to feed into and reinforce health inequalities highlighted by, and remaining/increasing, since the Black Report. Fucking great.